Sunday, 29 January 2012

Not your typical Sunday afternoon!!!

Today started off as a typical lazy Sunday, however it soon brightened up when we got a call to say John Hartson (ex Celtic and Wales footballing legend, and testicular cancer survivor) wanted to come and meet Oscar!  He was in Belfast today at a book signing, and to promote his foundation...

He was such a nice guy, and spent ages talking to us about Oscar and his treatment, as well as sharing his own experiences of fighting cancer.  He is now following Oscar on twitter @Wee_Oscar, and tweeted about him to all his followers!  The messages of support have been flying in since, and Oscar has gained almost 1000 followers in just a few hours!  Thanks again to John, and Seamus his driver for coming out of their way to see us!!

Poor wee Oscar is exhausted now after all the excitement, and is tucked up in bed asleep.  Hospital in the morning for blood checks, and whatever else tomorrow brings! 

Friday, 27 January 2012

Chemo 6 - more detail than Daddy provided...

Just a quick update on how Chemo 6 went - despite it including the worst of the 5 chemo drugs he can receive, Oscar pretty much took it in his stride as usual!  What an amazing little boy.  He has been sick a few times, tired, and not really eating much at times, but considering what his little body is being put through, we are so proud of him and tell him this every day.

These sessions are so exhausting, as Oscar receives "hydration" fluids to flush his kidneys to help prevent the chemotherapy drugs damaging them (his consultant said today that his kidneys are withstanding the treatment well, which is great news).  This means he pees every 1-2 hours, for 48 hours!  So plenty of lying around watching DVDs during the day.  The younger kids find it difficult and frustrating receiving their chemotherday, due to the method by which it has to be administered.  Oscar has a central line (a rubber tube) implanted in his chest, the "bags" of drugs, fluid, platelets, blood etc are then connected to this line via long tubes on a "drip" stand.  Although this stand can be wheeled around, it is so difficult to manouvre this carefully beside a 3 year old!  The central line can hurt if it is tugged, and also can easily be pulled out as we learnt in the early days, with serious consequences!  This is another reason we encourage him to make things, paint, colour in, and watch DVDs - activities that don't require much movement!  So the first thing Oscar and me do once these tubes are disconnected, is have a race - he loves taking a big run around once he is free to do so! 

He had to get platelets on Tuesday during chemo, and he took an allergic reaction to them!  That was quite scary, within minutes of the transfusion ending he had a huge bump on top of his head, and an angry rash over his face which looked like nettle stings.  His face was puffy, his eyebrows and neck were red, and the rash spread all down his body.  However it pretty much cleared up in 30mins with some Piriton!
Another platelet transfusion again today, even Oscar's consultant said we should be encouraging everyone who can give platelets to do so, as he is "eating them up" right now!  He definitely seems to be having more transfusions that the other kids receiving treatment, however none of them are on the same intense treatment plan as Oscar...

So the plan now is to go back on Monday for more blood checks, and admission on Wednesday (hopefully) for Chemo 7.  Can believe that will be 7 out of 8 done then... HUGELY important week starting 20th February, many tests will be performed to determine whether or not he has made enough progress to allow him to move to our next stage, which will be stem cell harvest (removing some of his own bone marrow to be transplanted back to him at a later date) and surgery... But for now fingers crossed for a lovely quiet weekend at home...

Wednesday, 25 January 2012

Chemo 6... done!

Chemotherapy cycle 6 done and dusted. All went very well and Oscar wanted McDonalds on his way home. See pic of him eating his cheeseburger happy meal!! (and barbeque sauce, AND ketchup). He was very happy to be getting into his own bed tonight :-)
Hopefully his appetite keeps up this week, sometimes he gets very sick a few days after the treatment.

Thursday, 19 January 2012

A week of highs and lows...

Been a bit of a hectic week since I last updated everyone!  Izzie (Oscar's little sister) has been sick, keeping us up at night and throwing spectacular tantrums!  She is well now, but we're hoping Oscar hasn't picked up her sore throat, it's been so difficult to keep them apart and stop them sharing juice cups and dummies (as they like to do!).  Everyday bugs are so much more dangerous for kids like Oscar.

Oscar had a brilliant day on Sunday, wrapped up like he was heading to the North Pole, he went outside and drove around on his motorbike, and pottered around with his Daddy, spending a lot of time doing not very much!  He even asked for his trampoline to be brought out of the garage, and did his best to bounce on it!  He was so happy, and so were we, it was like having our old happy go lucky little man back.  Here he is with Izzie on Sunday evening, painting, one of their favourite activities...

On Monday night he suddenly went downhill, the effects of the chemo hitting him like a steam train.  Then on Tuesday he lay about most of the day, had no energy, wasn't eating, and throwing up.  Poor Oscar, it's heartbreaking to see him go through all this each time.  Wednesday was a better day, he was quiet (as you all know isn't like Oscar!), but he went to the cinema with me and Granny Susie to see Puss in Boots!  He loved it, and happily sat eating his "popcorns" most of the way through it.  We phoned ahead to make sure there would be few people around, and made sure we sat on our own in a pretty much empty screen!  We even managed to escort him in and out of a shop to get new shoes, making sure he didn't come in to contact with anyone else.

Today was the worst day of this week so far, he has no energy, very poor appetite, and the doctors said he looks like he is "brewing something".  We were up quite a bit during last night with him, he had a nosebleed which lasted continuously for 1hour 20mins.  After that I checked on him every few hours, this is a sign his platelets are low and we're always so worried about him having a major bleed during the night.  Went to hospital this morning to get his bloods checked, his platelets were only 1 (normal is 150-400)!!!!  Frightening.  Didn't get home until 6.30pm, with all the delays getting platelets sent over to ward for him etc.  Please continue to donate blood everyone, still a major on-going shortage here.

Chemo 6 is due to start on Sunday, but with the bed crisis in the ward (8 beds serving all children with cancer and blood disorders in Northern Ireland), it may not happen on time.  We think this may be the start of our next major campaign...

Friday, 13 January 2012

Chemo 5 over, woohoo!

After a 12 hour shift at hospital, drugs, blood and platelet transfusions, that's chemo session number 5 over!  Here is Oscar curled up in his chair, exhausted, with all that going on while he sleeps...
Back to hospital in a few days for more blood tests, and painful injections every day until session number 6 begins next weekend... Oscar is a LEGEND

Thursday, 12 January 2012

A long day but a good one...

Oscar did so well today, almost 10 hours at the hospital and 3 chemo drugs later - he's still up and about having fun when we get home! 
SUCH a little trooper, makes it impossible for me to complain about my 10 hours at the hospital...  Home tonight, back in tomorrow for second half of this chemo, and a blood transfusion.  Thanks to everyone who has told us they are planning to become blood donors - you REALLY are making a big difference to people's lives.

Wednesday, 11 January 2012

Chemo Session 5

Day 40: Just packing Oscar's bag for hospital tomorrow, he starts chemo session number 5.  We have 4 down and 4 to go (providing it all goes to plan) - well done wee man you are doing so well!!!

Oscar's bag is filled with: DVD player and headphones, Scooby Doo DVDs (lots), Peppa Pig DVDs, various other DVDs from his expanding collection, Cbeebies Art magazine with Jungle Animal Collage activity, "big sharp scissors", glue, Peppa Pig pencil case full of colouring pencils and crayons, tuna sandwiches, milky bar and buttons, yellow dodi (dummy), and most important of all - Scooby Doo himself, who has accompanied Oscar to every hospital appointment.  Hopefully I can make 8 hours entertainment out of all that, and if not I can always call on Yellow Sophie (the play specialist) for expert help!  If everything goes well tomorrow, and Oscar is well, we should be allowed home after the chemo drugs have been administered this time.  Fingers crossed!

Tuesday, 10 January 2012

Read Oscar's Story

Oscar's Story page now updated.  Click the tab then scroll down to read.

PLEASE give blood and platelets

Day 39: Oscar was in hospital this morning to get a platelet transfusion, he gets one every 3-4 days.  Platelets help your blood to clot, without platelets you could bleed to death.
Normally, your platelet levels should range between 150-400, but Oscar's have been as low as 7!!!  Kids on chemotherapy need regular blood and platelet transfusions to keep them alive, and unfortunately there is a SEVERE shortage of platelets in NI.  They have had to be flown in from Scotland and other places, as we just don't have enough donors here.  We can see the date the donor gave their platelets printed on the bag, and each time we think "thank you from the bottom of our hearts for doing this, without you taking time to make this donation Oscar would be a lot worse off".

PLEASE PLEASE PLEASE give 1 hour of your time to make a donation of either blood or platelets in order to help save a child's life.

Monday, 9 January 2012

Some good news!

Day 38: Oscar had his mid-way tests today (ultrasound and bone marrow), to gauge how well (or not) he is responding to the treatment.  The unofficial report from the radiographer suggests it is good news!  The "deposits" of neuroblastoma cells (tumors) were difficult to find on the ultrasound - the first ultrasound baseline tests had shown extensive tumors on his liver, spleen and lymph nodes in his abdomen!  This is exactly the boost we need to prepare for the second half of this induction stage of chemotherapy.  Go Oscar!!!

We celebrated by making rice crispie buns (grumpy face as I was interrupting the chef at work)...

Sunday, 8 January 2012

Welcome to our blog!

At this point we are 37 days into Oscar's treatment, and have only just decided to create our blog.  A LOT has happened in those 37 days, so we will post some information on that as soon as we can.  In his 3 short years Oscar has made a big impact on a lot of people, too many for us to update as often as we would like, but we will try to update this blog as often as possible.  We will use this to keep everyone informed of Oscar's progress and act as our diary of his journey, so we can hopefully one day show him what challenges he faced when he is old enough to understand, and record how proud he makes us every day as he bravely fights this horrible disease.